Research recruitment through the patient portal: perspectives of community focus groups in Seattle and Atlanta

Kathryn M. Porter*, Stephanie A. Kraft, Candace D. Speight, Devan M. Duenas, Nyiramugisha K. Niyibizi, Andrea Mitchell, M. Rebecca O'Connor, Charles Gregor, Kendra Liljenquist, Seema K. Shah, Benjamin S. Wilfond, Neal W. Dickert

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

Abstract

Objective: Research recruitment through patient portals (ie, patient-facing, web-based clinical interfaces) has the potential to be effective, efficient, and inclusive, but best practices remain undefined. We sought to better understand how patients view this recruitment approach. Materials and Methods: We conducted 6 focus groups in Atlanta, GA and Seattle, WA with members of patient advisory committees and the general public. Discussions addressed acceptability of patient portal recruitment and communication preferences. Focus groups were audio-recorded, transcribed, and analyzed using deductive and inductive codes. Iterative team discussions identified major themes. Results: Of 49 total participants, 20 were patient advisory committee members. Participants' mean age was 49 (range 18-74); 59% identified as non-Hispanic White and 31% as Black/African American. Participants were supportive of patient portal recruitment and confident that messages were private and legitimate. Participants identified transparency and patient control over whether and how to participate as essential features. Concerns included the frequency of research messages and the ability to distinguish between research and clinical messages. Participants also discussed how patient portal recruitment might affect diversity and inclusion. Discussion: Focus group participants generally found patient portal recruitment acceptable and perceived it as secure and trustworthy. Transparency, control, and attention to inclusiveness were identified as key considerations for developing best practices. Conclusion: For institutions implementing patient portal recruitment programs, continued engagement with patient populations can help facilitate translation of these findings into best practices and ensure that implemented strategies accomplish intended goals.

Original languageEnglish (US)
Article numberooad004
JournalJAMIA Open
Volume6
Issue number1
DOIs
StatePublished - Apr 1 2023

Keywords

  • biomedical research
  • electronic health records
  • focus groups
  • patient portals
  • recruitment

ASJC Scopus subject areas

  • Health Informatics

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